About six years ago, I developed increasingly severe pain near the base of my tongue after an acute bout of laryngitis. It progressed into an extraordinarily painful episode that felt like I was being burned, electrocuted, and having a muscle cramp all at the same time. The pain was so severe, I felt like my throat was tearing in two. Subsequent episodes felt less burning, and more crampy/electrical, so I don't know if anyone else has had those sensations.
Anyway, I have a prior history of depression and social anxiety/phobia well documented on my medical records starting since early childhood and almost every time I've sought help from the medical community this either starts as a 'the suspicion' and grows progressively throughout the doctor patient relationship or is outright blamed as the cause from the start. I've had people try to repeatedly give me anti psychotics (not at all schizophrenic and very present) SSRIs, and a whole bunch of other irrelevant medications for 'pain.'
With doctors abandoning me and 'blaming me' left and right.I did a lot of research on the internet, what might cause pain. Finding glossopharyngeal neuralgia seemed very promising and seemed most likely of anything, but my experience differed a lot from the textbook experience. I have pain all of the time. Likewise, speech is impacted just during the major episodes, and I was mute for at least 2 years as it was too triggering to speak and was on an all liquid, luke warm diet as it was too painful to eat.
I managed to leverage a situation where I got medications that help me, in spite of no diagnosis and multiple people assuming I'm crazy. After reading about pain management, I got duloxetine, which which could be emphasize that it also treats mental illness too, right? I discovered valium was helpful during a trip to the ER and it was prescribed for awhile, but then suddenly taken away, saying they weren't comfortable prescribing a 'controlled' substance for someone 'like 'me' without more 'information.' When the med was taken away, I wen through horrific withdrawals and had the horrifically painful attacks every day, along with panic attacks too. So when seeking help for this i was told I was not only having 'emotional episodes and suffering from conversion disorder' but was also likely a drug seeking 'addict.'
I was ready to throw in the towel on the medical community, but I saw a sympathetic neurologist recently, who suggested it most likely is glossopharyngeal neuralgia, but he wasn't an expert on it and didn't feel he had the authority to give a definitive diagnosis. I'm going to be seeing some higher tier specialists soon who have more experience in pain. I'm hoping someone with authority can try to help me and stop blaming me. I just want to try to survive this thing, and it's incredibly difficult when people find any way they can to blame you. Going by all of the things that have been assumed of me: I'd have to be a psychotic, selectively mute, hysterical, drug addicted, malingering, and a liar all at the same time for these 'medical experts' to be correct. I'm pretty confident I'm none. I've got bad pain near the base of my tongue. Yeah, I've had depression, and I've been very suicidal at points in my life, but I don't want to kill myself over this, I want to survive this.
Thank you for this site and forum. I feel like it's been really informative and I think the experiences offered by people here are incredibly valuable, especially in a world where it seems like pain is ignored, denied, and blamed on the sufferer. I can't guarantee I have the same condition you all have, but I know it's horrifically painful and if it is at all similar, you all have gone through hell.
And even if I don't have this precise condition, know I've asked these doctors, why does it have to matter 'why' someone has horrific pain, anyway? If there's something that can be done to help someone with agonizing idiopathic pain. Why does this need to fit into a neatly labeled box to justify itself? I don't get it at all.